Tara’s Story

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In 2005 Tara was born. From the moment she was born she was trouble. Her apgar scores were only 1 and then 3. It took almost 2 minutes for her to take her first breath. Everything went along well and she headed home at three days old. At 6 weeks old Tara suffered her first seizure, whilst in hospital for another illness. She was severely ill and took 3 weeks before heading home. Our lives had changed for ever. After this first seizure the longest she ever went again without a seizure was 6 days, but that was rare. Up until age 4 she suffered at least 200 seizures a day. After age 4 she had less seizures 50-100 a day but they were more violent and needed more intervention.

Between age 5-7 Tara would be resuscitated 14 times, about half of these were by me her mother. When Tara begain school we put lots of emergency plans in place. Then the unthinkable happened, her older brother suffered his first seizure lasting over 45mins at school. He was never the same, he was suffering hundreds of tiny absences seizures almost so small you couldn’t see them but they started interfering with his learning, he was also suffering 3-5 major seizures a week, usually in the evenings as he got tired.

He would also suffers seizures in his sleep. We tried 17 medications for Tara; none gave her seizure freedom. She was slowly getting worse. By seven years old her IQ was too low to score, she was in nappies day and night, could only manage around 200 meters of walking without falling to the ground in a seizure due to the strain on her body.

Mostly she needed a wheelchair or walking frame. We were told there was little that could be done now. Keep our oxygen and bag close at hand and pray. We took her home and loved her but we were not prepared to give up so easily. We heard about Mullaways medical Cannabis pty ltd. A company based in NSW providing medical cannabinoid tincture to the sick and dying people of Australia.

At first like most we thought it was illegal. But we then saw the lab tests showing it contained no illegal substance. Tara was the first child in Australia to trial medical cannabinoid tincture – openly anyway.

Within hours we could see improvement; for the first time in 6 months we went swimming without requiring her to be pulled from the pool unconscious.

Within 10 days she stopped having seizures

55 Days later she had a small seizure lasting 90 seconds when in respite care.

She has now not had a seizure in 9 months.

She had also toilet trained, she walks runs and even does dancing.

Sean had a massive seizure in March and we decided it was time to start him on the tincture also. He is now 14 months seizure free and Tara is almost 17 months seizure free. Both children have been able to wean all their pharmacy drugs. Many ask about them getting high. The tincture we use does not give a high, many of their pharmacy drugs on the other hand did. It is a tincture (meaning liquid) given directly under the tongue. Many people are worried about the THC causing mental illness but the tincture we use there is 0.025% THC (under the legal limit) meaning it is impossible to cause mental illness or any other side effects of recreational cannabis. This is a medicine like any other. All our drs, case managers, schools respite workers etc are well aware of them being on it.

Our GP charts it when required, our neuro writes it in their records. My biggest regret is not starting it sooner. We can slowly crawl back some abilities but they will have life long disabilities. Had this been given after the first seizure or even at 1 year old we may have never had the intellectual disabilities that will always be with Tara in particular. With the introduction of the NDIS children with disabilities will finally get the assistance they need. But imagine a world where we could prevent the severity of the disability in the first place.

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ARCAN is an organisation created by parents, for families and the community; to raise awareness for rare chromosome disorders.
With ARCAN you will never feel alone and we will celebrate our differences together.